I am due a blood test to check my thyroxine levels after being put on 50mg (which I pushed for) a couple of months ago.
My question is, is it normal for TSH to increase or t4 to reduce after the initial dose? I thought so based on the fact levo replaces your natural thyroxine. I’m also not feeling that great and hoping that it’s related to me being on a lower dose than I should be, but can’t be sure as haven’t had blood test. My hair has also thinned out a lot and I find myself struggling to get the weight off more than usual.
When I went to the docs for something else, my doctor told me that I had enough thyroxine in my body (even though TSH was at 9), basically low key suggesting I shouldn’t have been put in thyroxine yet. It kind of infuriates me when they completely ignore symptoms/my TSH plus fact my t4 levels have always been on the cusp of being out of range.
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Hoop1888
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To feel well most people on Levothyroxine need a TSH of between 0.2 and 0.5 and free t 4 and Free t3 in the upper third of their ranges (or t4 and t3) . Ask for a print out of your results from the reception every time including those and from now on. Your doctor is talking absolute nonsense, aTSH of 9 is totally unacceptable. The aim it’s to get to optimised not get TSH just below 10. Can you see someone else at the practice who is not totally clueless? Otherwise email thyroid U.K. admin and ask for the pulse article question 6 where Dr Toft (an eminent and highly respected endocrinologist) gives these numbers highlight them and put them in front of you doctor and say that is what you want him to aim for, not a TSH of 9. Say you found them on thyroid U.K. which is recommended by NHS Choices. If he still gibs just drop in what was good enough for the Queen is good enough for you, thanks very much (he was surgeon to the Queen when she was in Scotland, he’s retired now). Hopefully that might get this idiot to start actually addressing your symptoms and initiating correct optimisation of the thyroid hormone therapy. To be honest if you can ditch them I would, this sort of doctor wrecks our health and lives when they have the power to improvement them but choose not to - ignorance is no excuse on 100k a year.
What may have happened with your meds is they have caused the thyroid to drop production further so you really need at least 25mcg increase and probably more like 50 to 100mcg, but it is normally done in 25mcg increments as t4 has a long half life, so builds up gradually in your system for about 6 weeks. It means you need to go gradually so you don’t overshoot the optimisation mark. It’s a pain, but your man has simply omitted the optimisation process altogether whilst happily gaslighting you and effectively leaving you poorly forever. He is lazy in his practice and completely incompetent. It makes me mad just hearing it. How do they even qualify to practice ?
I'm not sure there will be a standard answer here as we are all different. When I first started Levo I do remember my TSH rising after one dose increase, much to the disbelief of my GP at the time. There isn't a right answer basically.
Have you had vitamin blood tests done? Ask GP to run tests for ferritin, folate, B12 & D3. we need OPTIMAL levels of these to feel well and help our thyroid hormone work properly.
I finally got my post initial dose blood test and my TSH has decreased to 6 (from 9)but my T4 hasn’t changed. Does this mean that the tablets aren’t working? I was also asked whether I’d been taking my tablets which I have. I’ve only missed 2 in three months and always take them away from food and other medications. They’ve upped my dose to 75.
Also, is it commonplace for doctors to really listen to your symptoms once you are actually on the levothryoxine? For example, are they aiming for say, middle of t4 range and TSH range or is it more than likely they’ll just stop once TSH goes below top of the range?
The reason your T4 hasn't changed is likely just that you're not on enough hormone yet. I know we all tend to think that an increase would naturally mean that levels increase too but the reality doesn't always follow. See graph below as an illustration. The tablets are working perfectly well just your body needs more to respond appropriately.
Well done on getting a dose increase and quite right too.
Unfortunately doctors don't seem to be trained to listen to our symptoms. Patients have long complained about this issue and means that groups like this supporting and signposting hypothyroid people are kept very busy. To a great extent it can be individual with each GP as to where they think are numbers are good. Some will literally stop increases as soon as your TSH is within range. Others will get it to say 2, but most people feel well when the TSH is at or just under 1 so it can take some persuasion to get dose increases after a certain point as they then start blaming your symptoms on anything from your age, depression, psychological, menopause etc
I will stress that getting your vitamins to OPTIMAL will greatly help how you feel and get your Levo working to its fullest so work on getting them tested.
lo l .. that definitely wins the "most realistic graph" award Jaydee
Hoop .. if it does happen to you (that they stop listening when your TSH is just within range ).. keep tis post up your sleeve ... healthunlocked.com/thyroidu... -list-of-references-recommending-gp-s-keep-tsh-lower-
it is logical that we often end up to end up with less T4 than we started with when still on a low dose like 50mcg Levo .
The added T4 initially increases to total amount of T4 you have (some from thyroid / some from Levo ),, but just for a couple of weeks or so .... and then the TSH 'notices' this increase in T4 level and so TSH goes down a bit .. but then that lower TSH (6) is now asking the thyroid to make a bit less T4 than it was doing when the TSH was really shouting at it (9).
so the thyroid is now making less than it was in the first place ,, and if the dose is not enough to make up that difference, the T4 level is less.. until the dose is increased ...... This adjustment often has to happen few times before everything stays in balance an the amount of replacement is enough to keep symptoms improved for more than a few weeks/ few months at a time .
Thanks SlowDragon. I’m about 95kg. Regarding how long the new dose takes to start making a difference, is this a similar timeline to when you start on thyroxine first off? Or does it take less time when you begin increasing the dose as it’s already in your system?
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